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In the Spotlight

…With Paul Albert

By Andrea Eisenman and Jeanie Hanley

Having a transplant can be transformative, but it is not all fun and games. And yet, Paul Albert makes it seem easy in his attitude and the way he presents himself. I find him to be modest, honest and funny.

Paul was someone I had run into at the transplant games for the last few years. Most recently in 2010, we were staying in the same hotel and caught up with each other on the shuttle from the airport to our hotel in Madison, WI. It was there that I learned how long it was since he had been transplanted and, right away, it gave me hope. I was happy to know someone with CF who had had a bilateral transplant for that long. At that time, he had been alive 17 years after his transplant.

When the focus topic for transplants came up this year, immediately I knew whom I wanted to ask to be featured in this column. I still find him to be an inspiration and figured he could be to others as well: people waiting on the transplant list or people like me who have had a transplant but do not see that many people living past a certain amount of time. Paul agreed to be interviewed and we met briefly at the 2012 Transplant Games of America in Grand Rapids, MI. We got to catch up and I got to take his photograph sporting his newly won gold medal! Please welcome our latest star. Spotlight please!

Name: Paul Albert

Age: 53

When were you diagnosed with CF?
Diagnosed at age 3, had a life expectancy of nine years at that time.

When did you get your lung transplant?
I received my transplant on February 10, 1993; I was 33 years old at the time.

Where did you get transplanted?
I received my transplant at the University of Pittsburgh Medical Center. I go back every few years, but I have a number of specialists I see on a regular basis at Lehigh Valley Hospital, and I get monthly blood work and periodic PFTs. If I have a problem with my lungs, I will return to my doctors at Pittsburgh.

Did you feel better post-transplant right away?
It took a while to feel better. I spent the first 111 days post-transplant in the hospital, with over a month in intensive care. I had problems with infection and rejection, sinus surgery, emergency surgery for a lacerated liver, became septic, suffered serum sickness and, finally, kidney failure. When I was discharged I was on dialysis for another 2 ½ months; I was very weak. My PFTs gradually increased and I received physical therapy for five months.

What were your expectations post-transplant?
I didn’t know what to expect post-transplant. After initial setbacks I just thought about feeling better and going home. I guess after a few years I just expected to keep living without any expectations of how many years that would be.

The transplant obviously exceeded my expectations. I am still alive after 19 years and feeling well. In 1993 it was difficult to find information about lung transplants and life expectancy. My goal was to survive the surgery and then take it from there.

Would you do it again if need be?
I can’t answer that question now. I would have to consider the people on the list who haven’t had an opportunity for their first transplant.

What was life like after your surgery?
That was difficult on my body and the port in my chest restricted me. I returned to work full-time on October 1, four months after my discharge. The only time I missed work was when I had to go back to Pittsburgh for a checkup. I became a volunteer with the Gift of Life Donor Program where I learned of the U.S. Transplant Games. That gave me the kick-start I needed to start playing golf again so I could participate in the Games. My first Games were in 1994 in Atlanta. I’ve remained a volunteer with Gift of Life. I have a desire to help those who remain on the waiting list, waiting for their gift of life.

How were you feeling pre-transplant?
I played golf in high school but then had to give it up as it was too difficult to maintain my weight. As I went through my 20s my lung function was in gradual decline and lung infections were becoming more severe. At least once a year I needed a CF “tune-up”. Along the way I fought off a recommendation from my doctor to use supplemental oxygen when sleeping. I finally conceded in my late 20s and it really helped me to sleep better and feel more rested in the morning. After a serious lung infection in May 1992, I came home from the hospital using a Bi-PAP machine when I slept, and on oxygen 24/7. I didn’t always use the oxygen in public, but I kept a tank in my car if I needed it. I also came home from the hospital with a list of transplant centers and that started me on my search for a center I was comfortable with in pursuit of a lung transplant.

What was your daily regimen or health pre-transplant?
My routine pre-transplant was inhalation treatments three-times-a-day, followed by my parents doing chest percussion on me. That was in addition to pancreatic enzymes, antibiotics, and other medicine that I can’t even remember any more. The call from my transplant coordinator came at 11:00pm, while I was receiving chest percussion on Feb. 9, 1993. By the time I came home from work, I was too tired to exercise.

What is it like now, post-transplant? Do you have any limitations?
I don’t have any restrictions now except for common sense things like avoiding people who are sick, things outside that could harbor mold and fungus, etc. My lung function has consistently been between 70-75%, it has never been higher than that. To me that’s 100% because I’m able to do everything that I like. I used to play tennis in addition to golf, but now I’m more afraid of pulling a muscle or hurting myself playing tennis. My lungs aren’t holding me back. I try to walk every day to strengthen my bones.

Tell me about the life-changing pep-talk you received pre-transplant:
I was having a long stretch in Cardio-Thoracic Intensive Care Unit after transplant when a guy walked in who had CF and a transplant. He asked my parents to leave the room and then he told me to stop feeling sorry for myself, to get off the ventilator, out of bed and feeling better. The guy was Mickey Hart from Buffalo. I didn’t see him again until I looked him up on the golf course in Atlanta at my first transplant games. We’ve been friends ever since. We talk on the phone regularly, enjoy having a drink together at the transplant games and also playing golf. He had two bi-lateral lung transplants in April 1991 and is doing great.

How often have you been to the transplant games?
I’ve been at 10 transplant games, attending all U.S. Games since 1994. Atlanta 1994, Salt Lake City 1996, Columbus 1998, Disney World 2000 & 2002, Louisville 2004, Minneapolis 2006, Pittsburgh 2008, Madison 2010 and Grand Rapids 2012.

What do you get out of going?
At the Games I have a great consciousness of my transplant and how fortunate I am to be doing so well. I enjoy being with so many donor families so they can see the difference their gift made in the lives of others. I enjoy renewing friendships and meeting new people. The competition is fun too! But mostly I credit the transplant games for making the post-transplant “world” so much smaller for us. It gave me the opportunity to meet Mick, and so many others with and without CF.

What do you compete in when you go?
At the games I compete in golf, although I did try a relay race in 1998 and badminton in 2000. I’ve won gold medals in team golf in 1998, 2002 and 2004. In 2012 I won a gold medal in individual golf. That medal was the most satisfying because I didn’t play well the first day but came back and played much better on the second day.

Do you work?
I graduated from Moravian College with a degree in accounting. For the last 30 years I’ve been a lead auditor in the Northampton County Controller’s Office in Easton, PA. I’m also a Certified Internal Auditor. I’ve never been on disability, I worked up to the day that I received the call for the transplant.

Do people at work know about your CF and transplant?
People at work do know about me having CF and being a transplant recipient. They were very supportive during my transplant and when I came back to work.

Do you do volunteer work?
I have been a volunteer with the Gift of Life Donor Program in Philadelphia since 1994. Through them and the Lehigh Valley Coalition for Organ and Tissue Donation, we educate the public about the importance of organ and tissue donation. We have a poster contest, essay contest, fashion show, speaker’s bureau and tabletop display for health fairs. In 2004 I joined the board of directors of Gift of Life and remained on the board for six years. The board was composed of transplant surgeons, hospital administrators, donor families and transplant recipients. It allowed me to see how an organ procurement organization (OPO) attempts to maximize the number of organs from each donor, and to hear the concerns from the transplant surgeons. It was a fantastic experience being on the board of the most successful OPO in the world.

What is/are your inspiration(s)?
From a health standpoint, my inspiration for someone with a transplant is Mickey. He’s a great inspiration not just to me, but to a lot of other people too. For someone still battling CF, it’s one of my best friends – Lynn Pancoast. In the late ’80s she started an adult CF support group for people here in the Lehigh Valley. There are only four of us left. She was a major source of support during my transplant and has the best sense of humor. She keeps getting knocked down with CF and keeps getting back up.

The courage and strength showed by organ and tissue donors, and their families, inspires me. Through their unselfish gift at the most difficult time in a donor family’s life, they agree to donate their loved one’s organs and/or tissue to save or enhance the lives of strangers.

What would you tell people about people who are considering a lung transplant?
I encourage people considering a lung transplant to give it serious consideration. A transplant is the last hope of treatment for people with end-stage lung disease. There are no guarantees with a transplant but, if nothing is done, there’s no hope. It’s hard work recovering from a transplant, there are new medications to take replacing some you currently take for CF, there may be side effects from the medications, but the upside is limitless. Most people who have suffered with CF and the gradual loss of lung function will have forgotten what it’s like to live with good lungs. It’s a lot of fun! Go for it!

Andrea Eisenman is 47 and has CF. She is a Director of USACFA and is the Executive Editor of CF Roundtable and Webmaster. Her contact information is on page 2. Jeanie Hanley is 50 and is a physician who has CF. She is a Director of USACFA and is Vice President. Her contact information is on page 2.

If you would like to be interviewed for In The Spotlight, contact either Andrea or Jeanie.